Saturday, September 25, 2010

Preparing for this blog... I read back into my own blog entries from the days of Gabriella's stroke. I am sitting her crying tears of grief as I re-watch what she went through the morning of September 25, 2009. I'm not sure what I want to even say about that day.

I posted a prayer that night that kills me to read again. This poor mother, her poor child, what if they lost her? She was already going through so much with her pending heart transplant. My heart breaks for them. Oh, wait, that was us....

I am not reading back because I don't remember. Over the last year I retained what I needed to, the details and stats, and I pushed forward with finding her help to retrieve the skills she lost. I think the reason that I get so horribly emotional reading back to those days is because I detached myself from the pure agony I felt as a mother watching what she went through, because it was haunting me so terribly. She almost coded. We almost lost her. Post traumatic stress disorder at its maximum. My way of coping with the PTSD was to keep facing the steps in front of me so I would not have to keep facing the emotional agony of what happened, no matter how hard it was to accept what happened to her. It doesn't surprise me that I dealt that way.... I lost my dad at 13 and my re-dad at 21... and both times I did the same. I was haunted by the stress and emotion of it, so I focused forward and how to help my mom get through everything. I didn't take time to sit in the moment... it hurt too much. Of course, I am not saying this was the best route to manage... but it did keep Gabriella focused on recovery as well. Regardless, the pain was deep.....

Gabriella has spent 365 working hard. I wondered when she was still in the hospital weeks after her stroke where she would be in one year. I honestly had no expectations, no preconceived idea, nothing. I remember her eyes with a trapped look, her 'lazy arm' she couldn't move, her grunts and screams when she wasn't understood. This experience started a new form of understanding between Gabriella and I. Our relationship changed. Before her stroke she was very strong and independent and didn't even trust me to remove a band aid, much of it came after I had PJ and she had to share me. I even got a mothers day card from Paul that May and it said something about hoping Gabriella and I become closer. I loved her with all my heart, she was my baby and made me a mother. Our relationship just had a dynamic of independence. After stroke, I was there to read her next 5 thoughts to help lessen her stress... which was not easy for her to be dependent. I was thrown into the position of being her constant nurse, installing ports and giving injections in them into her belly, explaining procedures and being by her side for every one of them, keeping her doctors all on the same page after a crash course in medical training.... and she trusted me 100%. Gabriella and I have spent the last year planting roots of a relationship that will be unlike any other as we both grow older... and I feel blessed by that.

Never would have I thought it was possible for someone to get back as much as she has in just one year. From not being able to swallow or move her tongue and having only conversations through me as her translator, to having a (while not YET grammatically correct) conversation with anyone she wished to speak to in just ONE year.... THAT'S miraculous. She didn't have the luxury of being able to write or read to communicate... yet God built bridges for her to be heard.

Gabriella has overcome the odds in this past year. Her Neurologist told me a couple months out that she was at the max potential for her arm function at about 30-40% use.... and now today, with about 75% use, she proves him wrong. We were told she had a strong probability of cognitive problems, yet she tested a whole year ahead of herself this past January. We were told she would most likely have an issue retrieving words, and she did suffer from that as her words came in larger amounts, but her new sparkly heart has allowed her brain to function at a higher level and retrieving the words she wants to say is so minor it is hardly noticeable.

Not only did she overcome this life changing stroke.... look what she has achieved through her heart journey. Gabriella's story is something amazing, and though I always get flustered when people mention it, the more I think about everything she has been through and the more I read my old entries, maybe a book isn't that bad of an idea.

So now on this 1 year mark of her life changing stroke, and on the day we return home from her heart transplant, God has answered the cries of our hearts. He loves, protects and heals... both here and in heaven. His reasonings for allowing things like strokes and transplants or even taking little ones to heaven are unknown, but we continue to praise God in this storm!

Thursday, September 23, 2010

Life has taught me a lot in the last 4 months being displaced and distant from home....

I have learned to live with intent because to live is a gift. No one has the right to live. While some live to have a full life, others are taken too soon. Taking this short opportunity on earth to live with purpose is the best gift I can give my Savior. Making that first observation that we have no right to be here, but are blessed that we have been given the opportunity, is the first step to finding true happiness.

I have learned to be transparent in who I am. Those who love what they see have stuck around and those that cannot accept who I am have judged me. To both, I have peace with. To be true and honest to myself has been the most freeing experience.

I have learned to protect and enrich my family with confident, quiet grace. It takes only love and respect to make a family, or any relationship, thrive. Being a wind that causes a fire to grow higher only causes fire to spread and be destructive... something I no longer want to be involved in.

I have learned that there is a whole new way to appreciate your children, and it can only be discovered if you are forced to have to fight for them to survive. While I don't hope this on anyone or expect anyone to understand, I am thankful I personally was able to pull it from our experience.

I have learned to only put trust in a person if you are prepared for the disappointment that they may let you down. We are all human. We are all flawed. Just as I have been let down, I have let others down. Learning from it or being offended by it is the choice we make on our own, but which one is the one God would want us to choose?

I have learned that there is so much good in this world that we fail to see because we are forced by society to notice the negative. From random strangers to organizations, we have been blessed by good-doers, and will strive to always pay it forward.

How could I have not turned these last 4 months into a positive experience? The trial now will be to take home the reformed version of me and pray that she can keep the same focus. It shouldn't be too hard. I watched my daughter go from healthy baby and child to dying in a matter of a year.... but she came out FULL of life.... and I have this smiling face as my reminder:

Wednesday, September 22, 2010

If you would like to come visit Gabriella, we would love to have you. After all, our family and friends have been one of the biggest reasons we have made it this far in one piece! We just want to verbalize on here a few things that we hate having to ask of people and have noticed we aren't very good at it.

*we are enforcing a strict no shoes policy in the house. Yes, feet are gross... but the grime one can bring in on shoes is even worse.

*we will have strategically placed sanitizer throughout our little apartment, and have 3 sinks. The EASIEST way to prevent the spread of germs is simply by hand washing.

*if you have been sick or around anyone that has in the last SEVEN DAYS we ask that you please wait to visit until you are at least 7 days past exposure. You can carry a virus with no symptoms because your body can fight, but Gabriella's can't. This includes fever, rash, sneezing or coughing, infections, etc.

*we ask the same for even allergies. Sneezing or coughing, even if it is allergies, can still spread dormant germs that you are carrying but not sick with.

*please don't share a drink or food with the kiddos. Not because we are anti-sharing, but because it is a breeding ground for bacteria.

I know we will be visiting other's houses and we cannot be in control of everything. We will come with masks and sanitizer of our own, but please understand if we leave early or keep our distance. The reason for us being so strict within our own house and within the 4 of us is because it is the one place we can strive to keep as her safe haven, especially in the upcoming flu season.

And we are only being overly cautious as winter approaches so we can stay out of the hospital and with our families for the holidays, and protect her precious sparkly heart. Gabriella's risk for pneumonia skyrockets throughout the winter and just a simple cold can turn critical. The winter before her heart and before she was immunosuppressed, she was in the hospital twice for a cold gone bad. We expect that we will have a couple rounds of that this winter but will still do everything possible to prevent her from spending any time in the hospital!!

There has been some question and judgement as to our practices of taking Gabriella out and about. Not that I need to justify or defend what the doctors and I talk about as far as Gabriella's exposure, but because some people do need educated before they pass judgement, I will explain...... Why have we gone to Disneyland or the Aquarium, but express concern over hanging out with someone who is sick? Here is an analogy I compare Gabriella's health to.... driving. You get in the car and use all precautions.... seatbelt, mirrors, sun visor, carseat, airbags. Those are like our Lysol wipes, mask, sanitizer, Germ-X hand wipes and disinfectant spray. You never know what you may run into when you are out there, but you want to be prepared and HAVE to get around! But if someone in front of you slams on their brakes, you react and protect yourself by stopping safely enough back. This is like us not encountering sick people. While it is impossible to keep Gabriella away from every germ out there, we will be cautious when we do go out. If we kept her away from everyone and everything, then what was the purpose of choosing heart transplant for her?? Her new sparkly heart is so she can live a full and quality life, right? But we will not walk consciously and irresponsibly into a situation that is guaranteed to be dangerous for Gabriella, like hanging out with someone dog sick with the flu or cold, regardless of who gets their feelings hurt. Losing Gabriella is not worth making everyone else happy at a gathering.

And on that note, we will call this my one 'I'm a little butthurt' post for the month. :)

Thank you to everyone for your understanding!!!! We love you all and DO also acknowledge the support that we are given!!!

Friday, September 17, 2010

I just merged the separate blog we had created for Support & Fundraising with this blog. Any past events or fundraising information is now accessible on the left toolbar under 'support' and 'support - past events'. Streamlined. Simple. Thats what I need in my life.

Today marks Gabriella's 4 month heart birthday... and my has time flown by! 123 days since Gabriella was given new life... wow.

Yesterday we had transplant clinic... what turned out to be our last one here at Loma Linda. Gabriella is slowly gaining weight, her heart function looks great and there were no concerns! Best thing about this appointment was we went a whole 2 weeks without going in!! The last time we attempted a 2 week stretch, she ended up with CMV! The doctor moved Gabriella's meds to twice a day instead of 3 times, eliminating the 1am dose. In one week we will go in for bloodwork to make sure the new dosages are keeping her within target range for her immune suppression and then GO HOME! It is so odd to think of that. By our go home date, Gabriella and I would have gone 131 days without seeing our apartment, or even our state! Thats 1/3 of a year!!

I won't lie, and its not a secret to some I have confided in. I am having a hard time thinking of going home. Aside from the fact that I absolutely love California, have met some amazing people and feel like we fit in so great here.... I am going to have some major insecurity to get over leaving our team of doctors. Knowing their experience and comfort dealing with heart transplant kids for the last 25 years is huge. Perfect example is how Dr S turned a little freckle spot into CMV before it damaged her heart.... thats just incredible. We always have an immediate response to blood work which in turn leads to adjusting her medication levels immediately (at home it will not be as immediate). I know that if you put Gabriella in a line with 5 other heart kids, Dr S would know her heart because she has been so close to it. I know that if an emergency arise, one of the amazing surgeons could go in blindly to her chest and be confident in their ability to work on her. They know her heart inside out, their phlebotimist is consistent and amazing.... they are just plain amazing. I am trying to not let my comfort here set a preconceived notion about our new cardiologist back in Arizona that will follow her, but it is hard to ignore the comparison of experience. The good thing is that I am on it when it comes to what she specifically has been through. I'm educated on what has been with her and I think that will allow for more communication with the doctor. The problem is I don't know what we have yet to face... so I am fearful in walking that path without my amazing coordinators at Loma Linda. They are part of our family... and I will be eager to come back in November for clinic and her GFR testing.

Of course, I cannot minimize the excitement I will have to see my family. My godson has started school, my brother in law and his wife brought their new baby girl into the world, my littlest nephews have aged 4 months, some people I have seen a couple times and some not at all in 4 months! I have amazing friends in Arizona to help me fill the gap my friends here will leave when we aren't seeing them so often. The timing of everything allows us to come home just before the holidays and not miss out on such important family time. And not to mention, my amazing little apartment that we love so much. God is in that place... and I'm super excited to get back to our own space (where all 4 of us don't share a bedroom!!!)!

The best part of it all is regardless of where home might be, Gabriella is healthy enough to be released! She is a fighter and has yet again shown us the resilience of a child.

Of course none of this would have been made possible without the Ronald McDonald House. Just amazing. We have had this place to give us shelter and location close to the hospital for 4 months. Its downfalls of being 450sf and one bedroom are far out shadowed by the blessing of having a place to live and be together. Paul has been blessed by the most understanding and good-willed employer who allowed him to work remotely for 4 months, and he remained fiercely devoted to keeping focused on his work to make good on their generosity. I encourage you to contact your local Ronald McDonald house and see where they might need help. They accept time and financial donations. Our place cost us $15 per day... which is difficult for someone supporting 2 households in the shadows of the medical expenses piling up. The donations the house received helps families who might not be able to make their payment. The things people donate like toilet paper and paper towels and other essentials prevent us from having even MORE expense while we are displaced. Their volunteer meals and food for the kitchen stock are a blessing when the cafeteria meals can add up to $100's per week. The house is a place of refuge in the midst of being displaced... and I so wish everyone could know the blessing that it is without having to experience it firsthand!

Back to the post at hand... every single day has been a blessing to have lived since May 17. Not just for Gabriella, for all of us. While days have been hard here and there for a magnitude of reasons, we never loose sight of the blessing we have been given to just breathe. The trials are no longer a nuisance, but a learning experience to make us better people. We will take this 4 month marker and run with it! Praising God all the way!!!

We want to thank the congregation of Restoration for letting us tell our story and all of our amazing new friends we have met there! They have all been a major blessing to us as we have been in California for the last 4 months.

Thursday, September 9, 2010

I posted back in June the day before our new sweet friends sent their one week old baby girl Mathilda into open heart surgery to begin the repair on her heart condition known as Tetralogy of Fallot.... little did they know this heart surgery would only be the beginning of a long journey filled with new medical findings and a little one who would keep them on their toes.

Mathilda has spent most of her little life in the hospital, dealing with infections, a genetic syndrome, her congenital heart defect and numerous little hurdles. She is now 3 months old, and has only spent a couple weeks at home in August. Though Mathilda has been in the hospital, serving to be a medical challenge to the doctors and nurses at Loma Linda, she has kept strong and has 2 loving and amazing parents by her side!

Lisa & Nick, Mathilda's parents, have a wonderful support system of family and friends. They have been working on ways to help Miracle Mathilda, and there is now a Facebook group and Blog set up to keep everyone up to date on her progress! Of course, a support system is never too small... which is why I am reaching out to you!

I encourage you to bookmark their blog or add it to your reader! And on their blog main page is a link to their Facebook page which will be a quick source for information and prayer requests. There is also a link to donate, which I can speak from experience, bills add up and money goes fast.... Please support Miracle Mathilda!

I cannot wait for the day when this beautiful family is home and enjoying their new life as a mom, dad and baby girl! I love you Nick, Lisa & Mathilda!!! I thank God for bringing us together and even when we go back to Arizona, we will always be there for you!!!

PJ never gets much blog love... but don't underestimate my love for my little boy! As thankful as I am for Gabriella's new sparkly heart, I feel equally as fortunate and thankful for my son with a healthy heart!

PJ was born 9-8-07 at 1038pm.... he was born at 8lbs 1oz and was a little lover from day one! He was a momma's boy and a lovebug until he hit the terrible 2's where he blossomed to be a little comedian!

My Bubba

We had the blessed opportunity to spend the day (and a couple evenings before) at Disneyland for his birthday. A combination of our temporary location and our preexisting annual passes made it an inexpensive day to remember!! Monday we headed down to Anaheim for a few hours of Disney. Paul ended up working in the office on Tuesday and when he was off, we enjoyed a SUPER cheap dinner at Rainforest Cafe with a combo of our Rainforest membership (free appetizer/meal) and a $10 certificate they gave me when we signed up! We did a couple more hours of Disney that night before going to get some rest for our BIG day! Wednesday was PJ's birthday and we hit the park when they opened. We splurged on dinner and took him to eat at Goofy's Kitchen where he had an absolute blast loving on the characters and dancing with Goofy! We really focused on the day being about him, since that rarely happened much over the last year and a half. It was, however, Gabriella's FIRST TIME riding rides since her transplant! We have gone to the park a small handfull of times to watch shows or spent a couple hours just being there, but this time was full of rides.

We really enjoyed and soaked in this day of Disney. Gabriella's annual pass expires on the 2oth, and ours in December. Unless we win the lottery, or life gives us an unexpected turn, we will not be renewing our passes and visiting as often, which rips a hole in my core.... but we will again one day return to Disney! Paul & I have always had Disneyland hold a spot in our hearts, and theres nothing like seeing my kids love it now as much as we have!

Thursday, September 2, 2010

Last Sunday, we headed up towards the San Bernardino Mountains into an area called Oak Glen. It isn't deep into the mountains, but is a super great, accessible day trip. This area is apply country, and has u-pick orchards and country shops that are so fun to go to! This was our second trip up there since being temporary-residents of the area, and we truly love it! I needed a day of mental purging after 8 full days of hospital, home health nurses, SSI interviews, financial stress and normal life... and Gabriella deserved a day to run wild in nature.

We love this little park set aside from a busier picnic spot, called Oak Knoll Park. It's just gorgeous. It is surrounded by drop-off ridges that are hidden by the huge wall of mature trees, that also serve as a ceiling... giving the perfect amount of shade. There are hiking trails and picnic benches, and for 2 littles ones, lots of little things to explore.

We took a picnic lunch up there and enjoyed the quiet. Paul & the kids found the perfect sticks and started poking around in the trees and leaves to see what they could find while I sat on a bench and just stared. Have you tried that lately? It is so hard to find the right place and time to just space out, but WOW was it nice. Gabriella found a sparkly rock, they both collected acorns to take to Chip and Dale at Disneyland, and Paul found a stick he loved so much, he kept it and brought it back to the house where it has been smoothed and will be sealed. That guy is a nut.

Wednesday, September 1, 2010

Any financial support given will not be considered a charitable donation, but can be claimed as a gift on your taxes. Funds will be transferred into a Trust and used solely for expenses relating to the transplant and medical bills with reciepts retained to justify the spending. Thank you, from the bottom of our hearts for your gift and love offering.

We have had family come out pretty frequently since we have been in Loma Linda. Everytime they come out and we ask what they want to do, you have pretty good odds of betting they're going to say the beach. I mean, consider where they are all visiting from. Arizona is downright hot.

Sidenote- I don't care what any locals say about summer in the Inland Empire, this is nothing. Short 4-5 day spurts of hot and cooler evenings is a first class vacation over 120 days of 100+ even at 11pm with so much humidity due to the storms that never produce rain. I was told that my frequent SoCal visits over the last 10 years didn't count by a few people... "just wait and see when you are here for the whole summer". Ok, its Sept 1. And I was still right. ;)

Anyways, we loaded up the van 2 weekends in a row for our family that came out and headed to the beach! Both times it was a gorgeous 75ish with a shining sun.

Our weekend with Paul's brother Frankie, Frankies wife and son, and Paul's mom, we headed to Aliso Park just south of Laguna Beach. I didn't take nearly enough pictures, but I got this super cute one of my nephew jumping into a hole I dug for them!

During that visit, Paul's oldest brother back home and his wife welcomed their 2nd child, a baby girl, to the world! This makes grandchild #13, and my niece/nephew #11!

The next weekend was Paul's sister Suzanne and some of her troop. Her husband and oldest son couldn't make it out due to baseball practice, but we still had a blast on their quick trip! We headed to Huntington Beach....

About Me

Gabriella was diagnosed in April 2009 with a severe and irreparable congenital heart defect, Hypertrophic Cardiomyopathy. On September 25 2009, just before being listed for her new heart, she suffered a left MCA stroke, impairing her right arm abilities and taking away her speech. She was finally listed and received her heart after 97 days of waiting on May 17, 2010. Gabriellasheart.com has transitioned from a diary of our simple life to a log of Gabriella's status, and proves what a warrior she is.